Michael Sharpe skewered by @JohntheJack on Twitter

Discussion in 'General ME/CFS news' started by Indigophoton, Apr 9, 2018.

  1. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    15,188
    Location:
    London, UK
    I don't think that is a worry. If it is accepted that PACE was done badly then it will be accepted that any attempt to repeat it will have the same problems. Unless of course some very clever trial design is thought up. But the people who might want to do trials like this are not intelligent enough to know how to do that.
     
  2. TiredSam

    TiredSam Committee Member

    Messages:
    10,558
    Location:
    Germany
    I discussed the PACE trial with a friend of mine, a retired professor of neurology, and sent him some links. The next time I met him (for wine, with dinner, but more for the wine, we each paid for our own, an analysis of which will feature in my forthcoming paper as a footnote) his comment was "well, the only thing they can do is run it again". I was crestfallen. Mind you, that was before PACE had been so comprehensively destroyed. Hopefully it has reached the point now where no reasonably intelligent outsider could assume that it just needs running again.
     
  3. Indigophoton

    Indigophoton Senior Member (Voting Rights)

    Messages:
    849
    Location:
    UK
    :laugh:

    You don't. You so don't. You really haven't got the hang of this psychosocial research stuff at all.

    Just caught up on this thread and can't stop laughing, for so many reasons. Thanks for the amusement @Barry, @TiredSam and all :)
     
    MEMarge, Solstice, Inara and 9 others like this.
  4. Adrian

    Adrian Administrator Staff Member

    Messages:
    6,563
    Location:
    UK
    So what is a pragmatic trial?
     
  5. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    15,188
    Location:
    London, UK
    The term explanatory was used to describe trials that aim to evaluate the efficacy of an intervention in a well-defined and controlled setting, whereas the term pragmaticwas used for trials designed to test the effectiveness of the intervention in a broad routine clinical practice.
    A pragmatic view on pragmatic trials - NCBI - NIH
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3181997/

    PACE evaluated the efficacy of an intervention in a well-defined and controlled setting (even if not adequately controlled). It was certainly not conducted in broad routine practice.
     
  6. Adrian

    Adrian Administrator Staff Member

    Messages:
    6,563
    Location:
    UK
    To me its less the authors who should face consequences and more those who failed to apply a level of governance. So for example the head of QMUL who failed to ask questions and spend a lot of money trying to cover up the results. Or the Vice Chancellor of Bristol university who has failed to investigate Crawley doing research without ethical approval. Also the MRC who backed the PACE team switching outcomes and hiding data.

    If those in senior roles who fail in their job of providing governance then there is no effective governance and people can do what they want. The only way to get effective governance it to ensure it comes from the top and hence those who fail to provide adequate governance are suitably punished.
     
    MEMarge, Solstice, mango and 22 others like this.
  7. dave30th

    dave30th Senior Member (Voting Rights)

    Messages:
    2,448
    Right, and don't forget that the Vice Chancellor of Bristol University has also complained directly to the Chancellor at UC Berkeley in order to stop my work exposing Professor Crawley. More than once.
     
    MEMarge, Nellie, Solstice and 27 others like this.
  8. large donner

    large donner Guest

    Messages:
    1,214
    Well if you have had thirty years and taken all the funding and still cant prove your treatments work surely no one could think running another trial would be the solution.

    I'm not going to out it past some people to suggest it though.
     
    Last edited: Jun 15, 2018
  9. Hoopoe

    Hoopoe Senior Member (Voting Rights)

    Messages:
    5,433
    I'm simplifying because I'm exhausted at the moment and can't properly think things through. There must be some consequences. That's the basic thought.
     
    mango, Inara, Luther Blissett and 6 others like this.
  10. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    15,188
    Location:
    London, UK
    My impression is that the pain at QMUL has been significant and the lesson learned. But then White has retired so QMUL is out of the picture maybe. Bristol is more concerning
     
  11. Adrian

    Adrian Administrator Staff Member

    Messages:
    6,563
    Location:
    UK
    I wasn't aware it came directly from the Vice Chancellor. That puts him in a difficult position in the long term because what he has done there fails basic ethical tests (certainly any headline test). It is something that eventually could stick to him and destroy his reputation for a long time. Will he become remembered as the Vice Chancellor who promoted a professor who carried out research on children without ethics approval.

    Part of his job is to ensure the ethics of the organisation and he has failed here. Perhaps raising the issue to the university council or their governance committee would be worthwhile. I'm thinking he wouldn't survive as a CEO of a company. Lets not forget he gets paid £282k for failing to do the basics of his job.
     
    MEMarge, Nellie, Solstice and 12 others like this.
  12. Adrian

    Adrian Administrator Staff Member

    Messages:
    6,563
    Location:
    UK
    They are still hiding data.

    [Added]

    Its also if the senior university staff who don't control standards fail and get away with it there is no pressure for others to enforce standards. They get paid a high wage to perform such tasks.
     
    MEMarge, Chezboo, Inara and 12 others like this.
  13. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    15,188
    Location:
    London, UK
    True.
     
  14. Trish

    Trish Moderator Staff Member

    Messages:
    55,484
    Location:
    UK
    The Vice Chancellor of Bristol University is a doctor who has done medical research. He should know better.
     
  15. dave30th

    dave30th Senior Member (Voting Rights)

    Messages:
    2,448
    Yup. At some point I hope this will all come back to bite those who have abetted this crap. I'm lucky that Berkeley has shown that it actually does try to maintain some standards when it comes to academic freedom, even for non-tenured academic personnel like me. Perhaps that allegiance to standards is surprising to people at Bristol University and others who rely on collegial relationships to promote garbage as legitimate research.
     
    MEMarge, sea, Solstice and 30 others like this.
  16. Daisymay

    Daisymay Senior Member (Voting Rights)

    Messages:
    686
    I'm sorry but I don't think it is enough for the lessons to be learnt in private, that smacks of a typical establishment cover up, totally looking after themselves. There needs to be a complete public disclosure and apology for what's gone on.

    It's not a question of revenge at all, it's justice, accountability and making sure this doesn't happen again.
     
    MEMarge, Solstice, Chezboo and 15 others like this.
  17. Indigophoton

    Indigophoton Senior Member (Voting Rights)

    Messages:
    849
    Location:
    UK
  18. alex3619

    alex3619 Senior Member (Voting Rights)

    Messages:
    2,203
    Quite. All the data you need can be obtained by flipping a coin a thousand times. Or better yet, multiple coins a hundred each. You then claim anything you want. In this area of medicine the conclusion does not have to follow the data. If you do not get great results then run a subgroup analysis. You could in this way prove that yak fat cures cancer, or raises the dead. What has science got to do with it?
    [Satire]
     
  19. Seven

    Seven Senior Member (Voting Rights)

    Messages:
    186
    I think we can run PACe and GET with the 2 day cpet as a primary outcome measure, it will debunk PACE and give us great data to understand PEM.
     
    Simone, JemPD and alktipping like this.
  20. Lucibee

    Lucibee Senior Member (Voting Rights)

    Messages:
    1,498
    Location:
    Mid-Wales
    If you re-ran PACE with 2-day CPET as the baseline measure, you would quickly realise that most of the eligible patients shouldn't be subjected to any further exercise.
     
    MEMarge, Solstice, Chezboo and 15 others like this.

Share This Page